9 October Opportunities to Promote Data Sharing UCL and the YODA Project. Emma White. Associate Director

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1 9 October 2015 Opportunities to Promote Data Sharing UCL and the YODA Project Emma White Associate Director

2 Overview - Administrative Data Research Network (ADRN) - Administrative Data Research Centre for England (ADRC-E) - University of Southampton & University College London secure lab facilities - Safe environment 2

3 Administrative data research Uses data collected primarily for administrative purposes, usually when delivering a service not for research Eg data from government departments, national statistical agencies, but also interest in large surveys, and especially linked data Both substantive and methodological Answering the same fundamental social science questions with data not accessible by other means Record-level data enabling exploration of record-level relationships Not necessarily Big Data 3

4 Phase 2: business and local government data Phase 3: civil society data 4

5 Administrative Data Research Network (ADRN) Four Administrative Data Research Centres (ADRCs) Administrative Data Service (ADS) coordinates ADRN; central point of entry for researcher; key role in public engagement, outreach, policies and procedures, website Each ADRC is a partnership between academic institution(s) and national statistical organisation Centres are data processors, not data controllers Vision: to benefit society and quality of life through intelligent social research 5

6 What are we trying to achieve? Safe data Safe researchers Safe environment 6

7 ADRN Safe people, data and environments Integrated policies, governance and accreditation Board reports to UK Statistics Authority; Approvals Panel includes lay members; citizen panel/s being set up Support service, data scientists, trusted datalinkage partner organizations Research agenda including both substantive and methodological projects Aiming to improve methods and provide demonstrators for others to follow Examples include improved linkage methods; data quality measures; education outcomes, environment and health 7

8 Current situation ADRN contracts awarded October 2013 Secure labs built, policies and protocols agreed, staff in post, boards and panels established ADRN open for project enquiries November 2014: around 50 enquiries received, of which over 20 are now approved projects Early applications include ADRN co-investigators and PhD students - to test processes New research proposals: new ethical and practical debates (paradata, non-response) Implications for ethics committees Data provision, sustainability, archiving?? 8

9 Who can use ADRN resources? You need to: Be from academia, the public sector or a research organisation that s eligible for Research Councils UK funding Be capable of carrying out the research either independently or under the direction of an appropriate supervisor or lead investigator Attend accreditation training, and sign up to terms of use and breaches policy 9

10 What is an ADRN project? (1) Each project must: Be non-commercial research Be feasible, viable, ethical and have clear potential public benefit (ESRC Framework for Research Ethics) Make a case for using administrative data to carry out the research Show that the linked administrative data can only be accessed through ADRN, rather than alternative safe settings Not be research which a government department or agency would carry out as part of its normal operations Make its results public through ADRN website 10

11 What is an ADRN project? (2) *New* test questions: - Is the main outcome of interest economic or social in nature? - Is a significant factor that is being examined as causally important economic or social in character? - Is the use of social and economic variables simple for characterisation, to produce matched samples? 11

12 What is an ADRN project? (3) Examples: - Impact of asthma on a child s school attendance and achievement - Measurement of unmet health need in a health economics study - Non-randomised follow-up on survival after different types of surgeries where a measure of poverty was used to match groups - Study of different compliance to drug therapies between different social groups where the research question really focused on different in health outcomes between different social groups - Study of transport-related pollution and is impact on the risk of developing heart disease 12

13 What is NOT an ADRN project? A study where there is no evidence of any social or economic science in the proposal eg a long-term impact study of drug X on survival follow-up of RCT where the followup is entirely in terms of an individual s health 13

14 How does it work? (short version, 1) Researcher approaches ADS with initial enquiry Researcher submits proposal to ADS and appropriate ethics committee ADS (with ADRC support) conducts privacy impact and project feasibility assessments All evidence goes to Approvals Panel If approved: ADS negotiates data access with data owners Researchers undergo training to become accredited to use ADRN facilities (national harmonisation) 14

15 How does it work? (short version, 2) Data transferred from suppliers to trusted linkage partner (eg dedicated unit within Office for National Statistics) Linked, de-identified data released to ADRC safe setting (secure lab) and accredited researcher is granted controlled access Analysis takes place within safe setting, supported by ADRC staff Outputs vetted and approved At end of project data destroyed, documentation and syntax retained Plain-English summaries of research published 15

16 ADRN Projects include: Evaluating linkage between children s health, education and social care data: Pre-term birth sub-study Patterns of energy consumption using Living Costs and Food Survey 2012 & Understanding Society 2011/2012 & Dept Energy & Climate Change s National Energy Efficiency Data 2011/2012 energy consumption data Water demand analysis using Affinity Metered Water Sample 2011 (n=5,000) & 2011 Census household microdata 16

17 - McGrath-Lone et al. Early results (1) - Barriers to exploring the educational outcomes of children who are looked after in England, using administrative data - Potential effects of being in care during early childhood cannot be explored using linked data from the National Pupil Database and the Children Looked After dataset because of coverage and quality issues - Finding has been shared with the data owners and will allow them to make informed decisions about their data collection and specification of shared datasets 17

18 Early results (2) - Moore, Durrant & Smith - Combining survey data, paradata and administrative data to investigate the optimisation of government survey data collection given survey non-response, including whether findings can be generalised across different surveys - This involves computing the maximum no. of face-to-face calls any sampled household should receive to minimise collection costs without compromising survey data quality 18

19 Note! - Time - Application - Negotiation - Dataset specification - Free to researcher - Open Data vs open data - ADRN is NOT a data repository - Safepods/safeshare Title, Name, Date 19

20 University of Southampton & UCL secure lab facilities Description Physical security IT security Policies and procedures Accreditation Researcher support 20

21 Opportunities? Re-use clinical trials data by linking them with administrative data to answer research questions Make the data available to other researchers for them to link to administrative data to answer research questions Store data in secure lab facilities to make them available for research 21

22 Contact details e.e.white@soton.ac.uk 22